Recommendations for Addressing Technological Requirements for Statewide Parkinson's Disease Registries

The 2023 Parkinson’s Disease Registry Technology Summit, organized by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), focused on the technological requirements necessary for the establishment, operation, enhancement and ongoing maintenance of statewide Parkinson’s disease (PD) registries. It built on a summit held in the fall of 2022, which centered on building consensus around the common data elements that should be included in such registries in accordance with their level of maturity to meet an array of public health needs and research goals. It is our hope that the findings from these two summits, when combined with model legislation, will enable future registry efforts to begin with a head start, enabling the ability to build on previous work to more easily determine what data to collect, how to collect it and how to more easily and effectively legislate and operate Parkinson’s disease registries which contribute to shared goals of treating and ultimately curing Parkinson’s disease.

This report would not be possible without the contribution of all summit attendees (see page 33). The authors would like to extend their special gratitude to members of the planning committee, including: Ted Thompson (MJFF), Arturo Cabra (GE Healthcare), Laura Mandel (CRISP Health), Lori McMahon (Medical University of South Carolina), Robert Miller (American Society of Clinical Oncology), Gonzalo Revuelta (Medical University of South Carolina), Catrina Taylor (California Department of Public Health), Andrew Wilson (UCLA), and Allan Wu (Northwestern).